Emerging research from an international dataset of pediatric psoriasis patients is revealing much needed information about how children fare with commonly used systemic treatments, says dermatologist Amy S. Paller, M.D., M.S.

And she says the collaborative effort is powered by pediatric dermatologists — not industry.

Dr. Paller, professor and chair of dermatology at Northwestern University Feinberg School of Medicine and pediatric dermatologist at Ann and Robert H. Lurie Children’s Hospital of Chicago, presented findings from the PeDRA-EPPWG Study of Systemic Therapy in Pediatric Psoriasis at the July World Congress of Pediatric Dermatology in Chicago. She not only talked about the soon-to-be-published study’s findings, but also how a retrospective analysis could inform a prospective registry.

Dr. Paller and colleagues launched the Pediatric Dermatology Research Alliance, or PeDRA, in 2012, recognizing that pediatric dermatologists needed to work as a group to research dermatologic conditions in children because many of the conditions are rare and lack pediatric-specific data.

“That’s exactly what has happened in this work with pediatric psoriasis,” Dr. Paller says.

Colleagues in the European Pediatric Psoriasis Working Group, or EPPWG were willing to buy in. The groups shared goals to better understand dermatologists’ experiences with systemic drugs for pediatric psoriasis, and to get experience with a joint registry, which hopefully would pave the way for a prospective pediatric psoriasis registry, according to Dr. Paller.

Ten centers from PeDRA in North America and 10 centers in Europe came together to perform the study.

“It was a tremendous learning experience about some of the challenges of retrospective data collection and the benefit to prospective research using common data collection,” Dr. Paller says.

The researchers extracted 54 different items from charts of patients treated with systemic therapy or phototherapy, but only allowed patients to be included who had at least a minimum dataset that could provide important information on demographics, clinical characteristics and severity, systemic agents used, treatment duration and efficacy, side effects and reasons for discontinuation of medications.

A review of thousands of patient records revealed 446 which met criteria for the minimal dataset; of those, 390 involved systemic therapy for pediatric psoriasis. In this joint PeDRA-EPPWG study, which was funded by the International Psoriasis Council, data was collected using the Research Electronic Data Capture, or REDCap, web-based data capture tool.